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Connie: Cerebral Palsy, Cognitive Impairment and Seizure Disorder

Connie tell us what is was like raising her daughter, Farah, who has Cerebral Palsy, a cognitive impairment, and a seizure disorder. who is total care- meaning someone needs to feed, bathe, and clothe her. She open up about the joys and challenges she faced raising a special needs daughter. Connie was told for the first 5 years of Farah’s life to place her in an institution, but Connie refused. Farah is now 41 years old, and has remained at home with her family all of her life.

Maria and Brandon: Chromosomal Deletion 9Q

While Maria was pregnant with her son Chase, a prenatal ultrasound revealed a cleft lip and some umbilical cord abnormalities.

After Chase was born, testing revealed he was missing part of a 9th chromosome on the Q branch, known as Chromosomal Deletion 9Q. Chase is the only known person with this condition, in it’s severity, in the whole world.

Beth and Bryce: Angelman syndrome

Beth and Bryce have a son named Smith. After Smith was born, Beth noticed that he would not look at her. Over the next few years Beth and Bryce noticed more developmental issues; Smith could not walk or use his hands or talk. Smith was nearly three years old before he was diagnosed with Angelman syndrome.

Phyllis and Keven: Polymicrogyria

Phyllis and Keven’s youngest daughter, Laura, was not progressing as a typical three or four month old, so they took her to a specialist and found out Laura had Polymicrogyria. Phyllis and Kevin were crushed to learn the news. Laura could not walk, talk, or feed herself, but she could light the room with her infectious smile.